I’m going to take a quick detour from my fun travel post to share something a sweet friend requested. One of my girlfriends, who has a child close in age to Cora (my 6 year old), has a cousin with autism. And as they get ready to host him for a visit, my sweet friend asked, “how do I prepare her for him? Like, what do I say? I have no idea what to tell her and I don’t want her to say anything crazy to my sister-in-law.” Friends, we live in a crazy, politically-correct (and yet not) kind of world. In a time when parents can break each other’s windows to jump to the rescue without knowing any details, we can’t ask questions that might actually help us understand each other better. Holy smokes the irony makes me totally bonkers.
Before I give you my thoughts on sharing autism with your kids, a few things you should know:
- This is a legitimate issue- 1 out of 66 kids in America is diagnosed with autism, and those numbers continue to grow. When Celia was diagnosed in 2007, the stats were 1 in 108. By the current standard, chances are that your child will have a child like mine in his or her class at school within the next two years. And they will probably have questions as to why their classmate is different from them.
- I am NOT a fan of Autism Speaks. I think they do great work with funding autism research and raising funds for that research. But for an organization that takes in nearly $64 million dollars in annual revenue, I don’t think they actually raise awareness other than the fact that they host a bunch of races and sell bumper stickers. Think of it this way…what do you know about autism that comes from a national campaign, aside from the statistics of how many kids will have it? So if you have questions about autism and want to understand it better, my suggestion is to go to TACA- talk about curing autism, to learn more about actually relating to individuals with autism (including a great video).
- It’s okay to feel weird about it. I feel weird about it. But knowledge is power. A few uncomfortable conversations can go a long way in making autism a better-understood condition, so that the million-plus kids who are currently affected can walk into a more understanding world. And there’s something beautiful that comes from appreciating differences at an early age- befriending a person with a disability makes room for a broader understanding of the world, and a wonderful sense of compassion for those who live in it. So the tough conversations are well worth it.
Now that all that’s out of the way…on to the real stuff. What to say to your child, to help him or her understand my child (or any other child) who has autism.
- Call it what it is. This won’t be true for every family affected by autism, but it is true for us. Celia knows she has autism, and our other children know she has it. So there’s no reason your child shouldn’t know it too. Autism is a real condition, and calling it that means that we can understand it better and respond to it more appropriately. It also means that she’s not throwing tantrums or getting “special treatment” because of some mysterious unseen affliction.
- Autism means Celia’s brain sees the world differently than we do. I never tell other people that “God made Celia special,” because God makes us all special. Autism is not what makes Celia special- it’s what makes her different. It makes her life harder. So we say that- our brain sees the world as information. And it sends that information like a train to tell our bodies, our mouths, and our attitudes how to move, how to speak, and how to behave. In a person with autism, that train might not always get to the right place, or its cars might come unhooked, and it might come off the rails sometimes. But that’s okay. It just helps us know that when she’s crying, or shouting, or freaking out or laughing at the wrong time, her train is probably a little off its tracks. And by being kind and asking her questions or sometimes giving her space, her train can get back on track.
- Autism is not contagious. Kids can be scared by differences, especially as they learn so much about transmission of germs and illnesses at school. Don’t take for granted that autism seems like a disease to kids. We say “Celia was born with a brain that thinks differently, but you can’t catch it from her. She’s not sick, she’s different. And being her friend or hanging around her won’t make you autistic. It just might sometimes get on your nerves.” Truth people. It’s empowering.
- Autism is NOT always easy to be around. Sometimes kids with autism do annoying things. They may say or do the same things over and over again. Sometimes they get too close to you, talk too loudly, or shout when they don’t get their way. They might do things that we know we ought not to do- like pick their noses or chew with their mouths open. Yep, it’s gross. But they do it for a reason- maybe saying the same words again and again makes them feel safe when they’re feeling scared. Maybe they’re shouting because they don’t understand the rules of the game. Maybe they’re picking their nose because they have boogers! Seriously- they’re kids who need help understanding boundaries. And it’s okay if you need to take a break and not hang out with them, just please be understanding and don’t be mean about it.
- She wants to be your friend. Celia struggles big time with understanding her world. It scares her, and it exhilarates her. She wants to experience everything, and she also only wants to do what she knows. She loses her temper and she only wants her way. But she also LOVES other kids, and wants to be one of the girls playing at a party. If I had a dollar for every play date she asked me to arrange, I would be shopping and not blogging right now. But she doesn’t understand how to act when those play dates happen. She wants to be in a regular class and on a regular team and in a regular club, but in those settings, she is perilously out of touch with how she is supposed to behave. So be patient with her. If she’s doing the wrong thing, don’t yell at her “no Celia!” Say, “hey Celia, can I show you how we’re all doing that?” She wants to be like your kid. And your kid can teach her how to do it 🙂
The world is a scary place. We’re not all nice to each other, self included. We’re not always patient with each other, self included. Celia knows she has autism because my fear is that she will engage a person of authority in one of her defiant screaming episodes and endanger herself, and I need her to identify that she has a mental illness in order to keep herself safe. That’s the world we live in, friends. I can shelter her and keep her away from all that, but the truth is, she wants to be there. And the world needs Celia. She is challenging, but she is also sweet, loving, and loyal. And children who have befriended her have such a lovely understanding of what it is to give to the least of these- those who cannot help themselves but want desperately to belong. I want that for all of our children, and we can’t be afraid to tell them the truth.